We are lucky. I have a degree, know the autism diagnostic criteria, know kids with autism, and knew exactly what to do, and what to say when it came time to get my son diagnosed. Not everyone has such a perfect alignment of knowledge and need. Most start with their pediatrician. Many notice a drop in language and other skills following a reaction to vaccines, or just that their baby isn’t developing normally. Nobody knows what causes autism, just that it happens, and that the rates are increasing. Most of the children who are diagnosed as autistic are boys. However, better understanding and testing has shown that girls are just as susceptible. It usually takes years to reach a diagnosis, unless the symptoms are severe. This is unfortunate, because studies show that early diagnosis and intervention can have a positive impact on the course of autism.
As parents, we know our child. We recognize when something is wrong and even if we cannot quantify or explain it, we see it. It is difficult for us to convey that knowledge to a doctor who may spend 15 minutes at a time with us and our child. So, be precise, and stick to the point. I had a list that I read off of behaviors, and other concerns. I made sure I read the whole list before the doctor left the room.
In college I wrote a paper on how families describe symptoms determines which diagnosis they get. If a family described the problem as being language based, they were more likely to receive a diagnosis of autism. If they described the problems as behaviorally based, they were more likely to receive a diagnosis of oppositional defiance disorder, which was incorrect and later diagnosed as autism. So start with language. My son was talking at 7 months, but his vocabulary and other language are centered around certain topics. He also repeats himself, a LOT, and while he knows a lot about things he is interested in, he lacks social skills and understanding.
Then list anything else you’ve observed that isn’t typical. Most autistic children are sensitive to touch, sound, light, texture, taste, and pressure. My son craves pressure, and stimulus, while most others are highly oversensitive and will often cover their ears, and throw tantrums over clothing or foods. Most autistic children stim, or engage in stereotypical behaviors. These can include flapping their hands, rocking, banging their head, spinning the wheels on toy cars, stacking things, lining things up, watching their fingers or small bits of things and the list goes on. Most autistic children will not look you in the eye, and fail to develop relationships, while some may be extremely clingy. Their emotional responses may be over the top, and their ability to adjust to change is low. We have a set schedule and any change results in tantrums and tears. We have to prep for every new event.
The best way to go, is to look up the criteria, and list every behavior that your child exhibits and how you see it. Take that list. Make sure they make you take the “tests” for autism, and that you get through the whole list. If your pediatrician, or other doctor, won’t listen, bypass him and head straight for the nearest expert. It is worth the extra money to get a diagnosis, because once you have that diagnosis on paper, you have a world of services that are out there waiting to help you and your child.
For the diagnostic criteria, here are some helpful websites: